Do You Hear the People Sing?

This arrived in the mail today.

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I texted a picture of it to Sam and got this response.

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So I opened it and saw this.

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It’s hard to read but it says “Congratulations” at the bottom.

Samantha is over the moon happy.  She says she is going to wait to hear from William & Mary, but I think that in her heart she knows exactly where she wants to be in the fall.  We are SO excited for her.  Today is a definitely a good day.

xoxo

Robyn

Limbo

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Living in limbo stinks.  It’s not that I mind waiting for things.  In fact, I think that I am pretty good at waiting.  That is the great thing about living so much in your head, you can entertain yourself pretty easily.  But limbo?  Not having the answers?  Ugh.  Samantha should hear from her #1 school, CNU, by Tuesday.  I feel confident that she will get in, but even if for some reason she didn’t, we can handle that.  I just want to know and am so ready to celebrate her acceptance!

Cancer is the ultimate limbo.  Not knowing from one week to the next what will happen.  Being in a state of constant questioning.  Maintaining a hopeful attitude while not getting a lot of positive reinforcement.  Feeling paralyzed to make long term plans because you are worried about treatment schedules and how he will be feeling that far away.  Dave’s bloodwork last week showed his CEA was up to 17 from 6 before he took his unplanned chemo break. This doesn’t change the plan of attack to begin chemo again on Wednesday.  It just means that we have more unexpected news and more unanswered questions.  The alternatives to limbo are cure/remission which is what we are praying, hoping and striving for or things not turning out well which is unthinkable.  So, we take it one day at a time and one step at a time and one bit of information at a time in our world.

xoxo

Robyn

Samantha

Image“But there’s really no question. It always comes down to just two choices. Get busy living or get busy dying.”

 

“Remember that hope is a good thing, Red, maybe the best of things, and no good thing ever dies.”

 

Both of these quotes come from Rita Hayworth and Shawshank Redemption by Stephen King.  While the use of quotes in college essays can be tricky, Samantha used both of these effectively when writing a supplemental essay for William and Mary.  She talked about cancer and what it has taught her.  She talked about appreciating the time you have and enjoying the moment.  She talked about the power of hope.  In other words, my 17 year old has learned lessons that it takes others a lifetime to figure out and some never figure out at all.  She is an amazing kid who is going to soar in college and beyond.  We are waiting to hear from her first of two schools to let her know if she was accepted.  Exciting times!

 

xoxo

Robyn

Inspiration and Eggs Benedict

ImageRemember the five other couples we met at the Johns Hopkins retreat?  (https://embracingtherollercoaster.wordpress.com/2012/10/08/the-couples)  We met up with two of the couples today for brunch.  I was equal parts looking forward to it and dreading it.  I find that I don’t really like to expose myself to anything that might permeate the bubble in which I choose to live.  We sat and chatted and brunched and caught up.  Two hours flew by in the blink of an eye.

D, the oldest member of our group, had noticeably lost weight.  He was in the hospital in December for pleurisy.  Turns out for the last three years, he has had cancer related challenges around his birthday.  This year was no different.  He has a tumor on his back which has started to grow and so he is now back on a chemo regimen that he swore he would never do again because the side effects are so awful.

J, the only female patient in our group, looked great.  I thought she looked even more lovely than when we met her in October.  She revealed that her last two scans were not good.  She has been through lots of different chemo regimens many of which stopped working.  She said she is hopeful that this one will make a difference for her.  When she hugged me goodbye she got very teary eyed and emotional.  It made me worry about how “not good” her scans are.

Once again, I was humbled and reminded that while we may find our path challenging and tiring, there are others out there who are forging ahead through so much more.  They are doing so with grace and humor and tenacity.

xoxo

Robyn

Sweet Child of Mine

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I have been blessed with three amazing kids – very similar in many ways but also extremely different.  Parker is my sweet sweet natured child. She is the kindest person you will probably ever meet.  This years “wish list” had 27 items on it, but she was quick to let me know that they were just suggestions and she certainly didn’t want or expect all of them.  The items ranged from a “blank notebook to draw in” to an oboe and an ipod.  Santa brought her an ipod, and we rented her an oboe and signed her up for some lessons.  She was THRILLED.  Over and over, she proclaimed it the best Christmas ever.

With her sweet nature, Parker is also extremely sensitive.  I got a call from her teacher earlier this year to let me know that Parker started to cry during class.  They were reading a story. Apparently the story got her thinking about Samantha leaving for college and how she wasn’t going to see her as much.  (She cherishes ever minute her older brother and sister spend with her.  I know they have no idea how much little kindnesses such as inviting her to the mall or asking her to play a game mean.)  Parker also worries about Cupcake getting older and that he is going to die someday.  But the most heartbreaking event happened this week.  She came into our room after having a bad dream and told Dave she could never imagine having another dad and doesn’t want anything to happen to him.  At nine years old, she carries the weight of the world on her little shoulders.

xoxo

Robyn

The Latest Scoop

ImageToday we went to see Dr. Spira to discuss Dave’s chemo treatments.  We are all in agreement that it makes sense to go off of the trial.  Basically, if he stays on the trial, he would 1) have to have a scan that shows no tumor growth while he was off and 2) he wouldn’t be able to resume any treatment until the end of January.  The drug trial protocol is pretty strict.  Instead, he will restart his folfiri regimen which is what he has been on since May.  Once he is fully healed, he will add Avastin back to the mix.  Avastin works in a very similar way to Ramucirumab (trial drug) but is already approved.  In fact, he was on Avastin during his first line of chemotherapy last year.  It was thought that Avastin isn’t effective in second line treatment but more evidence is changing that way of thinking.  I continue to believe that we are in the right hands and the decisions we are making are the only ones that make sense.

xoxo

Robyn